Grover's disease

[chazas]

Hey, everyone.  New here - a 48 year old caucasian guy living on the US east coast.  My dermatologist just told me that the red spots I've had a few of on my chest and torso for several years - but have been developing more of - are Grover's.  I had a severe herpes outbreak about 15 years ago that involved my torso and I always thought the GD was new herpes lesions and had been hitting it with Valtrex.  No wonder it wasn't working lately.   

Mine is not so bad - I had only had a few spots off and on for years, but I have a lot of faint spots now, which my partner finally noticed - never had before.  I have one (only one!) on my hand that itches a lot, and some on my chest that itch if I scratch them or if I get into the steamroom.  Guess I won't be using the steamroom as much any more.

I spent 4 years living in Hawaii earlier in my 40s and I attribute this to that - not enough sunscreen - but who knows.  I also have had basal cell carcinoma on my face. 

Anyway, good to see the thread, even though it doesn't sound like there are a lot of options (confirming what my derm told me).  Personally I'm not yet interested in pursuing ehe mercury theory, sounds kind of far-fetched and also doing away with seafood which I now need for high cholesterol would be pretty drastic - but whatever works, if it gets severe I would probably try anything.  Anyway, I should count myself luck I don't have a lot of itching and it isn't visible unless I'm shirtless.

I'll be back from time to time.  It's nice to know there's somewhere to go....

[Geraldine]

Welcome. And, yes. It is nice to have somewhere to go! This is not a condition that anyone needs to face alone. Those of us with extreme and persistent cases really count on contact with other sufferers!
Geraldine

[Geraldine]

Hi Missdaisy,
Scroll down under the messages on the site. there will be a box much like this to write in. Under the box there will be some choices. One will be POST.
I too have a disabling case of Grovers. It can be dibilitating. I find some temporary relief using VERY hot packs...use washcloth. Hold in plce unti cools to warm. Do again in the next area...When fiinished, I use my hair drier to get realy dry, the rub in a mixture of Sarna and Blue Emu. The I powder liberly with Gold zbond Medicated powder. This can give me a couple of hours, if I doon't sweat.
ALSO I have found that locating the most painful and burning "spot" and covering it wit liquid bandage  or "New Skin" really helps with a bad. one. Some times just one or two bad spots can make your entire side or stomace burn.
Geraldine

[missdaisy]

Hello,
OK, I think I am figuring this out   I am new to the frustrating world of Grover's.  I was diagnosed in a hospital via biopsy.  I have tried cortosone creams (can't live on this), antihystamines (can't live on those), baths, crying, screaming, and nothing lasts too long.  I am now seeing a Natureopath Dr to do some cleansings in hopes that whatever triggered this might be due to some internal mess that can be somewhat fixed.  I dream of the day when this doesn't hold me hostage.  I have a pretty severe itchy/bumpy case going on here.   I joined this forum to share any successes (or lack thereof) in the quest to "control" this disease.  It is negatively affecting everything from my work to personal life.  It is a lonely place, embarking on this journey, but nice to get and give info through venues like this.

keep 'em coming
Missdaisy

[Geraldine]

missdaisy
No known cause and no known cure. Shared fact...85% of those who get Grover's disease, get over it within weeks, months or a year or two. The rest of us (the 15%) have it for the rest of our lives. The fact that GD is usually transient...and that it is so rare that no derm in my town could even diagnose it, is why there is no big push to find a cure...in fact, NO PUSH to find a cure. I can't imagine holding down a job with a case as extreme as yours and mine. I am retired. I just barely can do a 3 hour volunteer job once during the week!
Much of my pain is also due to welts that can actually be felt under my skin. Few if any of these turn into "spots" but hurt like heck! Burn and itch. Often the only relief I can find is going to sleep! I do use Atavin and Ambian.
Geraldine

[Geraldine]

Anyone out there had a derm prescribe Retin-A for Grovers?!? My new Derm just did, and what I read scares me. Also says will be a skin irritant for several weeks...I'm in enough pain W/O adding to it unless the end result is miraculous.
Geraldine

[Dondi]

Geraldine-  I didn't use Retin A for my Grover's, but my daughter used it for acne scars on her face.  It turns over the layers of the skin faster,  so it may cause a little dryness and redness for a short time. You can apply a moisturizer to help with dryness.  If you don't want to take the chance on a large area, why don't you try a small area first where the skin is the thickest that is effected by the Grovers, and see if it helps.  It is not like a steroid cream.  I tried all sort of things and nobody ever mentioned that, but I think I would have given it a shot.  But then I can only speak for me.  Good Luck. - Dondi

[Geraldine]

Yes, Thanks! Will do the small area at a time.
Geraldine

[Sarri]

Hey Everyone!

It's been a while since I've heard from some of you. How's it going?? Any new coping ideas / skin experiments?? I am still using my humidifier all of the time in my home, and it's been a huge help to rejuvinate my skin. Well, keep me posted on how you're doing. I hope everyone is in good spirits - I know that's one of my biggest challenges. Any good tips for staying cheerful through this life challenge???

Best Wishes ~ Sarri

[Elisa]

Hi Sarri,

It's nice to hear from you.  I've not been on the forum for a while because my Grover's is down to four-five meaningless spots on my chest, but I'm scared to write that almost incase it suddenly springs back like it was.....  Also since I left the forum I read from time to time some pretty bad cases of Grover's and I really do sympathise but it's terrifying too having been up that road last year.

Is yours clearing up at all or is it still the same?

My fingers are another story and since I was last in touch I've done further tests which would indicate that it's neither a real case of arthritis nor a real case of rhumatism.  It's hybrid.  It is highly likely that it is Grovers related and it's not getting better (and not getting worse either).  The diet hasn't helped my fingers at all.  The diet made me grouchy so I restarted eating dairy products because I frankly don't feel any difference when I eat them.  I'm still off all grains, gluten and everything else I'm allergic to.

How's Dondi, Jeff, TomA and everyone else?
All best,
Elisa

[Geraldine]

Hi Elisa,
Sorry to report that I am getting steadily worse. Am headed to another allergist today hoping for a food allergy clue. My derm thinks there is another condition on top of the Grovers...Looking for relief of SOME kind!
Geraldine

[TomA]

Geraldine,
Sure hope you can find more relief.

Sarri/Elisa welcome back. The latest thing people have been trying here, as shared by BobA a while back is blasting the spots with a hair dryer. Sounds counter-intuitive, but the heat does stop the itching for a  while. The spots don't go away with the drying, the itching just keeps coming back. I'd stopped using Dovonex for a while, but I'm experimenting with putting the Dovonex on the spots then using the hair dryer. This does seem to help the spots go away more quickly. 

TomA

[Geraldine]

Hi All,
Have had food allergy tests...looking for possible complicating condition...Zip...Nada...allergic to no foods at all. The allergist did suggest high doses of real a antihistamine like Zyrtec and even combining it with Atarax...esp at night. My complicating issue of under the skin itching, burning welts, bumps, lumps...whatever you want to call them...prompted his recommendation. Not sure how well the Zyrtec has worked, because this condition is so unpredictable. This is not the wimpy daytime antihist...it will knock you out. I suggest starting with a half...when you are not about to drive, etc. GREAT for napping!
Geraldine

[Seattlejeff]

Hi Sarri,

It's nice to hear from you.  I've not been on the forum for a while because my Grover's is down to four-five meaningless spots on my chest, but I'm scared to write that almost incase it suddenly springs back like it was.....  Also since I left the forum I read from time to time some pretty bad cases of Grover's and I really do sympathise but it's terrifying too having been up that road last year.

Is yours clearing up at all or is it still the same?

My fingers are another story and since I was last in touch I've done further tests which would indicate that it's neither a real case of arthritis nor a real case of rhumatism.  It's hybrid.  It is highly likely that it is Grovers related and it's not getting better (and not getting worse either).  The diet hasn't helped my fingers at all.  The diet made me grouchy so I restarted eating dairy products because I frankly don't feel any difference when I eat them.  I'm still off all grains, gluten and everything else I'm allergic to.

How's Dondi, Jeff, TomA and everyone else?
All best,
Elisa

Hey Elisa,

Good to hear from you.  I haven't been on the forum for awhile.  It seems my Grover's has turned into a case of adult acne on the back, and according to my derm is clearing up.  We shall see.  I'm glad yours is still at bay.

It's interesting about your fingers because as I mentioned to you before I had problems with joints in my fingers prior to my Grover's outbreak.  Was diagnosed with the beginnings of oste-arthritis.  I think there may be a connection.  I hope yours get better.  Mine are about the same.

I'm still on my allergy diet.  I'm beginning to fudge here and there, but I find myself scared to try something I'm allergic too because it will cause a trigger.  My nutritionist says I have to desensitize myself from this stuff, and it all, in my book, is very complicated, and has somewhat effected my quality of life.  Hard to eat out and order, expensive to buy organic foods, as I'm sure you have found.

Anyway, just keep plugging along.  Miss you and always wish you the best.  Glad you check in with us from time to time.

hugs,

Jeff

[Geraldine]

Hi All,
Think it has been established that there is a definite connection between psoriasis and arthritis. So a connection between Grover's and arthritis would be logical. Seems the common connection between all is some sort of autoimmune disorder...again.
The "real" antihistamine seems to be easing some symptoms and pain. Hard to tell with this drat disease, as never know when one is just experiencing a period of inexplicable mild remission or some remedy is really working.
Geraldine

[Elisa]

Hi Jeff, Sarri, TomA, Geraldine and all,

I think you are right Jeff, this allergy diet is going to take a long time to prove anything.....I've now re started on dairy products and there is no difference whether I eat them or not.  My fingers are painful, swollen and very ugly....it looks like I have two mens fingers on my hands.....awful.  One on each hand as well!

Have you not found any differences since you began your diet?  Effectively it is tricky to eat in restaurants and it is also more expensive than normal eating.  I am avoiding all cereals so imagine how complicated that is, no form of bread at all - and in France that's tough!

It would appear in my case that diet and spots don't go together.  My Grover's is pretty much at bay.

Geraldine you are right about the psoriasis/arthritis link but nobody in the medical field seems to know anything about such with Grovers albeit obvious to all of us with Grovers.

Take care,
Elisa

[Seattlejeff]

Hi Jeff, Sarri, TomA, Geraldine and all,

I think you are right Jeff, this allergy diet is going to take a long time to prove anything.....I've now re started on dairy products and there is no difference whether I eat them or not.  My fingers are painful, swollen and very ugly....it looks like I have two mens fingers on my hands.....awful.  One on each hand as well!

Have you not found any differences since you began your diet?  Effectively it is tricky to eat in restaurants and it is also more expensive than normal eating.  I am avoiding all cereals so imagine how complicated that is, no form of bread at all - and in France that's tough!

It would appear in my case that diet and spots don't go together.  My Grover's is pretty much at bay.

Geraldine you are right about the psoriasis/arthritis link but nobody in the medical field seems to know anything about such with Grovers albeit obvious to all of us with Grovers.

Take care,
Elisa

Elisa,

Good to hear from you.  I'm glad your Grovers is at bay.  I'm sorry about your fingers so swollen and painful.  I assume you have seen a rheumatologist?  There are medications that can help I believe or cortisone shots....but you probably have done the research already.  Good luck with that.

As far as my diet is concerned, I'm quite frankly frustrated with it.  You are so right about it being almost impossible to eat out because you can't find anything to order.  I loved eating out, and this has really crimped my joy of doing so.  It also is expensive buying the food appropriate to your diet.

As far as results, I think it has helped somewhat with my Grover's, but I have flare ups of my folliculitus.  Hard to distinguish between the two.  Frankly, now since I've been on my diet for so long, I'm fearful of going off it in fear of it triggering something.  Kind of wish I never had the test to be honest.

But it's encouraging to know you tried dairy, and nothing seemed to happen.  I need to talk with my nutritionist about desensitizing from the stuff I'm supposedly allergic too.  Believe it or not, now she thinks I'm allergic to the things I've switched too and should be retested.  These tests are expensive, and I'm wondering if they are of any true value....

Anyway, I wish you the best Elisa.  Glad you check in from time to time!!!!!

Take good care,

Jeff

[Elisa]

Hi Jeff,

I'm sorry your diet is frustrating and I fully understand as I am living the exact same thing: I wonder if indeed these expensive allergy tests are correct. 

You might remember that I am intolerant (and not allergic) to 200 things one eats, not counting my scores of supposed true allergies....gluten, cereals, even vanilla!

I do not believe that I am allergic to dairy products but the tests say I am.  There is something however with grains and cereals because they do make me swell, but again, I don't believe that they are life threatening.  Where do you cut the line between the pleasure of eating as normally as possible and at the same time, trying to do what the medics say is right?

Yes of course I've seen a rhumatologist and I've done loads of xrays and other tests.  The man had never heard of Grovers.....even at the American Hospital in Paris which is supposed to be terribly good, they don't know what Grovers is!

A friend recently bought me a pair of tipless arthritis gloves.  Again, my fingers problem is a Grovers related hybrid one, sort of arthritis and sort of rhumatism...the gloves do not relieve the pain but they reduce the swelling....quite fascinating because if I had a true case of rhumatism, they shouldn't do anything!  Enigma!

Take care,
Elisa



 
 
 

[Seattlejeff]

Hey, everyone.  New here - a 48 year old caucasian guy living on the US east coast.  My dermatologist just told me that the red spots I've had a few of on my chest and torso for several years - but have been developing more of - are Grover's.  I had a severe herpes outbreak about 15 years ago that involved my torso and I always thought the GD was new herpes lesions and had been hitting it with Valtrex.  No wonder it wasn't working lately.   

Mine is not so bad - I had only had a few spots off and on for years, but I have a lot of faint spots now, which my partner finally noticed - never had before.  I have one (only one!) on my hand that itches a lot, and some on my chest that itch if I scratch them or if I get into the steamroom.  Guess I won't be using the steamroom as much any more.

I spent 4 years living in Hawaii earlier in my 40s and I attribute this to that - not enough sunscreen - but who knows.  I also have had basal cell carcinoma on my face. 

Anyway, good to see the thread, even though it doesn't sound like there are a lot of options (confirming what my derm told me).  Personally I'm not yet interested in pursuing ehe mercury theory, sounds kind of far-fetched and also doing away with seafood which I now need for high cholesterol would be pretty drastic - but whatever works, if it gets severe I would probably try anything.  Anyway, I should count myself luck I don't have a lot of itching and it isn't visible unless I'm shirtless.

I'll be back from time to time.  It's nice to know there's somewhere to go....

Chazas,

First, welcome to the forum.  You will find much support and help here.

I am particularly interested in your case as it sounds almost like you have folliculitus on your torso.  I have bumps and a re-occurring rash on my neck and upper torso which has been biopsied and determined to be a form of folliculitus.  A biopsy on my back which had a different presentation of bumps and dark patches, but didn't itch like yours, showed Grovers.

Treating Grovers is tough.  Generally it runs it's years course and disappears.  But in I think 20% of patients with it, it doesn't go away.  For me it has been over a year and I still have traces of it.  Most of it has become a bothersome but infrequent case of adult acne on my back which is being treated by a prescription.  For the Grover's though, I was given a prescription of Selenium Sulfide Solution 2.5% which I scrubbed on my back three times a week or so.  You need to add water and make it kind of sudsy then apply.  Leave on 5 minutes and rinse off.  That seemed to work initially.  Also moisturizing a lot.  And using Sarna for itching if you need to.

Some folks have found using a hairdryer on spots as they begin to emerge makes them not develop.  I've tried this but with 50/50 success.  You need to hit each spot with the highest temperature until it almost burns.  I guess I just couldn't tolerate the heat, but for some it has been a god send.

For folliculitus, if infact that might be what you have too, try washing with Hibiclense, let set for a few minutes and rinse completely.  I tried it last night, and I already see improvement.  Just read the directions carefully, very irritating to eyes and ears.

I have not tried the mercury cure either.  It is kind of hit and miss and very individual.

Just hang in there, and let us know how you are doing.  Maybe some of this will help.

By the way, I lived in Hawaii for eight years, moved back in 2006, never had any problems there until I moved to the Northwest.  I was at the beach every day there too.   Total sun worshiper.

Drop a line when you get a chance,

Best,

Jeff

[Seattlejeff]

Hi Jeff,

I'm sorry your diet is frustrating and I fully understand as I am living the exact same thing: I wonder if indeed these expensive allergy tests are correct. 

You might remember that I am intolerant (and not allergic) to 200 things one eats, not counting my scores of supposed true allergies....gluten, cereals, even vanilla!

I do not believe that I am allergic to dairy products but the tests say I am.  There is something however with grains and cereals because they do make me swell, but again, I don't believe that they are life threatening.  Where do you cut the line between the pleasure of eating as normally as possible and at the same time, trying to do what the medics say is right?

Yes of course I've seen a rhumatologist and I've done loads of xrays and other tests.  The man had never heard of Grovers.....even at the American Hospital in Paris which is supposed to be terribly good, they don't know what Grovers is!

A friend recently bought me a pair of tipless arthritis gloves.  Again, my fingers problem is a Grovers related hybrid one, sort of arthritis and sort of rhumatism...the gloves do not relieve the pain but they reduce the swelling....quite fascinating because if I had a true case of rhumatism, they shouldn't do anything!  Enigma!

Take care,
Elisa


Hi Elisa,

It's always good hearing from you.

I'm with you about this diet.  You know, some doctors buy into it, but most don't.  My primary physician thinks it was a total waste of money, and I am compromising my quality of life.  I tend to agree with him.  But now that I'm into it I don't feel I can turn back.  Need to make an appointment with my nutritionist to see if I can reintroduce some of the stuff I'm allergic to back into my diet. 

I'm amazed at how many things they came up with that you are allergic too.  I think I was allergic to about 24 things, including corn, wheat, potatoes, lemon, apples, pears, polysorbate 80 and some other things.  But over 200 sounds kind of questionable.  Have your fingers gotten worse since you started the diet?  Could it be the you aren't getting the proper nutrients?

I hope you get an answer concerning your fingers as I'm sure it is very frustrating and kind of scary.  My osteo-arthritis in my fingers haven't seemed to changed.  Don't know what is triggering yours.  A true mystery but I hope one solved soon.

Anyway, great hearing from you as always, and I'm glad you check in with us.  We'd miss you lots if you didn't.

Best to you always and take care,

Jeff